I went and was checked today in NY and i do have chiari and also basilar Invagination when the spine doesnt attched to the skull. I also have c1, c2, c3 and maybe c4 vertebrates fused together. I also have been told my spinegoing upwards is 1 inch longer them normal. They want to do a de compression and also go threw my mouth to cut 1 inch off the vertebrate and fuse the vertebrate to the skull. Alot to hear in one afternoon. Dont know what to do anyone have the done can can give me an idea what to expect. Do it or wait. I am having some symptoms. numbness pains, headaches.
I had a Basilar artery aneurysm that is how they found my Chiari. My spinal and blood flow would become blocked and it created the Basilar aneurysm. I can say surgery helped a little but there was not really a choice in my situation. I am alive and have a fairly productive life, I just carry on through the pain. I have numbness, severe bouts with pain, and headaches mainly with the weather change. You are in my prayers and if I can help or answer questions please ask.
God Bless!
Eileen
Im very confused on what to do so i think i must get further input from other specialists.
that sounds like alot of surgery to me, how long have you been dealing with all of this?
get a second opinion!
also if you need this done, it can now be safely done through the nose with endoscopes instead of through the mouth like has been done historically. happy to give you referral info if you need!
Id be happy to get some referrals the guy i went to said you have to go threw the mouth to do the procedure. Yes send me the doctors name. Im in NY im 53 and have always had neck pain which i just live with but i would say over the last year it has gotten worse. When the doctor told me ny head is not attached to my spine that kinda threw me. Its like how does my head stay on. He said people with this are usually from 1 1/2 to about 17 years old he couldnt believe i was 53 and just recvently started complaining. I dont know.
the most experienced teams for endoscopic surgery for odontoid resection seem to be in NY at Cornell, Pittsburgh and UVA. i had my chiari decompressed in NY by jeff greenfield but didn't need the odontoid resection or fusion. i would go to one of those centers for a second opinion.
Were you happy with the out come of your surgery? How long ago was it and how do you feel now.
i am so happy (surgery in march). i was headed for a much bigger operation too but this seems to be an area where the docs don't all do the same thing. i think there are some folks who get bad advice from what i have seen here so i am happy to offer my opinion if it helps.
I once watched some things about surgeries going through the mouth... From what I can gather, it seems unnecessary and the recovery is painful.
It was mentioned that I have this condition as well, I don't... I have basilar-impression (a lesser form of invagination, invagination should be taken really seriously btw). As for my cervical spine, I have a retroflexed-odontoid (that's the bone responsible for the basilar impression, it's on the C2) and my C1 is unfused in the back.
I can't believe that you would have so many vertabrae fused together naturally without having really serious health issues. Definitely get some other opinions. If you don't mind me asking how old are you and what doctor did you see in NY?
I saw Dr greenfield was very happy with him. he recommended decompression surgery and to leave the basilar invagination alone for now. Dont know what to do. Wait to see if it gets worse or just do it. Whats the answer? How do you know when to do the surgery or just live like youve been living. in pain but getting along.
Pepsican,
do you happen to have any MRI stills (pictures) you can upload to your photos section? I'm in a similar situation and I would love to compare ours. Especially since you're a male... I think we're outnumbered here man :)
Pepsican said:
I saw Dr greenfield was very happy with him. he recommended decompression surgery and to leave the basilar invagination alone for now. Dont know what to do. Wait to see if it gets worse or just do it. Whats the answer? How do you know when to do the surgery or just live like youve been living. in pain but getting along.
Speaking of dr.Greenfield... this was an add on the side of my facebook page :
http://www.cornellneurosurgery.org/chiari/doctors_who_treat_chiari.html
Pepsican,
Do they have other patients that have had the surgery that you can talk to? Maybe that could help you make the decission. Good luck.
Wendy
I just joined today…so I’m not sure if you have found any answers yet. I was diagnosed with both CM and Basilar Invagination. Decompression alone will do more harm than good alone but it sounds like they want to do craino cervical fusion…same as me.
I saw dr oro in CO but if you are in NY the Chiari institute is there. They are said to be best of the best. I saw a mystery diagnoses show once with a girl that had everything we do… Basilar invagination/ retroflexed odontoid and Chiari…her doctors were at the Chiari institute. Not sure if you have been there?
The surgery through the mouth is the absolute hardest way to get this done…if they have to go through the front I would ask that they do it through the neck. But I am praying if I ever decide to have the surgery they will be able to go through the back for both the fusion and the decompression. I am opting to wait…I have made some lifestyle changes…I am way more careful since my cranium is not on tight ;). But I am not willing to subject myself to that life changing surgery when I am able to live normally now…one day my normal life may change and surgery will be a choice I choose to make…but not yet.
Anyway…good luck! Ps I don’t recommend going against doctors orders…it’s just the choice I have made. I recommend making the choice you are comfortable with 
Courtney i went to a specialist in NYC and he said do the De-compression and hold off on the Basilar because that would make room in the rear of the head. Hes done about about 100 of them but a very good results. Answers are not easy to come by you should go to multiple doctors and see what they advise and go with who you feel comfortable with. Going threw thew mouth is an old way of doing they now go threw the nose but you may not need both done so get different opions. How old are you
Ive been to 4 doctors... The Chiari Care center and I saw the head neuro spine surgeon at Duke medical center were the last two....the first were local to me. All of them said decompression with cranial instability and would cause further stress on my brain stem. This was for me of course...it would be awesome if decompression alone would fix me! Of course looking at all my MRI's it is clear if I didn't have BI I wouldn't have CM...the bent vertebrae pushing against my brain stem is causing everything behind it to crowd. I don't plan on doing anything but surviving for as long as I can...surgery is not something I am interested in...at all.
Im 36 and was diagnosed Feb 2011. It is clear now looking back I have suffered with this all my life. All the weird symptoms now make a whole lot of sense.
I hate to hear anyone has what I do but am sure glad i found this site where there are people like me.
Courtney im the same way the BI casued the chaiari i have seen a few doctors and gotten differnt opions. The last one in Manhattan NYC where i was told there the best told me that you have lived with this for a long time and you can probably live with it alot longer . Things happen quickly with this i am getting leg pain and hip pain dont know if its connected or not. He said if i had the decompression done he would not touch the BI because it would leave room and hes done about 100 operations with chiari. it may be woth a trip to come to NYC and talk to him hes very good and not going to pressure you. he tell you like it is in his view
Good to hear some doctor is not gung ho on operating for BI. It sure seemed like I may not have any other options available. Maybe I will give NY a go before I make any rash decisions...which I am hoping ANY decision would be many years down the road!.. I have survived 36 years and I dont see why I cant survive many more just like I am.
Sorry to hear about your leg and hip pains. Ive never had any issues with that...numbness/coldness rarely but never in the joint. Hopefully they get it figured out.
It sounds like you have a good doc that you feel you can trust....that is so important when you are facing something so unknown.
I responded to your post hoping to help you with what I knew and you ended up helping me :) Thanks for that!